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my future husband has lupus....

Hi everyone,
I am new here and badly in need of someone to just listen....

I am 24 years old and planning to marry the love of my life this June. He and I have been together for 2 of the most fabulous years of my life. He is my strength, my soul, my absolute everything. We were engaged on the beach in Europe last July. And when we came back, we were diagnosed. With lupus.

At first it was nice to have the diagnosis. A DVT, anemia, joint swelling and a nice little rash under his right eye....this is what he had. The most ironic part is that we are both medical students and started to notice the rash when we were studying for our board exams. Now I look back and I remember how I thought we had our life stretched before us and I feel so sad....

He is currently on azathioprine, prednisone, and plaquenil, doing well. Hemoglobin normal, managing APS with coumadin. Trying like mad to get off hte prednisone (HATE that drug!!). But I feel such a loss.

Every day I go in to see my patients on my morning rounds and I look at the wives with endless patience, love, and pain in their eyes as they listen to me talk to them about their husbands who are sick. Their strong, handsome husbands now reduced in weakness to whatever it is that ails them. And lately most mornings I have to find a closet to hide and cry. I am so scared that one day- maybe soon?- that woman will be me.

I love this man more than life itself. The question is not do I marry him, the question is how do I cope with this pain, with the questions, with the NEVERENDING FEAR that one day everything we have dreamt about- big things like children, careers, and small things like Sunday morning jogs and coffee runs- will never be ours? I think terrible things that I cannot help- I feel angry at everyone- the rheumatologist, the medications, healthy people, myself, even my fiance (how HORRIBLE) sometimes, and then I quickly feel sad, so HELPLESS, that this AMAZING, STRONG man who is the picture of patience, intellegence, strength and honor, has to deal with this disease. Of ALL PEOPLE- him!!

I try to look at the bright side- we got the diagnosis quickly, he takes his medications regularly, has a wonderful world-reknowned doctor, and we can take steps early to prevent bad complications. It has helped me to see how to talk to my own patients- to understand FEAR- fear of the UNKNOWN and what it is like to have so many questions but to not even know how to put them all into words.

I never thought I would look to a discussion board for support....but this fear I have is so secretive (most people do not know his diagnosis), and it is eating me up inside. I don't know how to be strong for him, I don't know how to not be scared. I don't know how to not grieve for the future I dreamt of having....

Any support, even just an email of encouragement, would be much appreciated. I just need someone who can understand where I cam coming from to talk with...